You can always go with the first word that likely pops into your mind – POWER – but I encourage you to think outside the box a bit and go with something different…for now…
Here’s what comes up for me!
Knowledge is CONNECTION.
Anyone who is involved with Cervivor knows that connection is a huge part of “who we are.” It is through our shared experiences that we connect via social media, Cervivor events, and relationships. This connection is rooted not only in experience but also in the knowledge of those experiences and the important information that we come to learn because of it all. Information about HPV, cervical cancer, prevention. Information that, combined with connection, tends to result in “power by numbers” as a collective force of advocacy and change.
Which leads me to my next word…
Knowledge is ACTION.
I’ve seen it happen a lot – and it’s so exciting to witness. Once people have reliable and important information, they usually can’t help but DO something. Knowledge spurs action in some way or another. Whether it is action for self by scheduling exams or staying on top of screening, action for others by encouraging friends and family or sharing information, or action for the cause and greater good by sharing personal stories as an advocate and impacting change in the HPV and cervical cancer space. At Cervivor, we see this continually in our patient advocates – working hard to take the information they have to “go and do” and make an impact in so many ways.
Knowledge is PREVENTION.
Whether you’re a cervical cancer patient/survivor or not – being armed with important knowledge about HPV and cervical cancer can ultimately lead to prevention and help towards eliminating this disease that we now know is preventable. Knowing what causes cervical cancer, being up-to-date on current screening guidelines and practices, being informed about vaccination all affect the impact that this disease can have. When we’re informed, we can advocate for our own preventative health or that of a loved one. When we’re informed, we know what to look for and ask for at the physician’s office. When we’re informed, we can make decisions to reduce disease. When we’re informed we know the importance of prevention.
So now, I’ll circle back to the one “go-to” word that fills in that blank…
Knowledge is POWER.
Knowledge does lead to connection, action, and prevention – but all of those add up to POWER. Power that can save lives and impact change. As patient advocates, this informed power is a driving force of what we do, how we lead, and the change we make at Cervivor.
I’ve seen this power firsthand at Cervivor School – one of our main outreach programs that educates and trains cervical cancer patients and survivors to become patient advocates. It’s wonderful to witness so many at Cervivor School realize the impact they can have as we empower them with information and support. As patients and survivors, they realize the unique platform and influence they have. That combined with relevant information, their personal stories are perhaps the most potent force they hold.
Your turn! Knowledge is ___________.
Heather Banks is Cervivor’s Lead Advocacy Educator and recipient of the 2016 Cervivor Champion Award. As a 13-year cervical cancer survivor, she is an active advocate for HPV and cervical cancer awareness and prevention. Heather’s advocacy efforts have included testifying to the FDA in 2013 for co-testing efforts, speaking to government representatives in DC, and becoming a member of Cervivor’s Leadership Team. Heather lives in Indianapolis, Indiana where she is an Instructional Coach and Specialist at the elementary level. She loves spending time with her husband and two children; ages 16 and 13.
My name is Jodi Madsen. I am a thirty-year-old mother of two toddlers living with stage IIIC2 adenosquamos cell carcinoma of the cervix. I completed weekly chemo and daily external radiation for eight weeks in the spring of 2021 followed by four internal radiation sessions.
I started a new cocktail of chemotherapy in August 2021 consisting of Avastin, Carboplatin, and Paclitaxel every three weeks. I wanted to share what a day in the life of someone in active healing looks like, because I know how terrifying the word chemotherapy can be.
November 1, 2021
I take five tablets of 20 mg dexamethasone and try to settle in enough for my brain to allow me sleep before the medication kicks in and I am brimming with energy. I am loading steroids before the six-hour chemo infusion I have tomorrow. I then arrange my next dose on the nightstand and grab a book. My husband is snoring beside me in our queen bed at the hotel about ten minutes from my treatment center.
We made the seven hour drive to South Dakota from our home in northwestern North Dakota a few days prior to drop my toddlers off with my mom, then the seven hour drive from there to Nebraska Medicine in Omaha the day before. In an effort to forget that I had to miss Halloween with our two young boys, we got last minute tickets to Hamilton at The Orpheum. I was honestly still buzzing from the theater and probably wouldn’t have known if the steroids kicked in. Before I know it, the clock reads midnight. I set my alarm and revel in the wonderful news I was given via MyChart update from the CT scan taken earlier that day. Shrinkage and no new growth, all in barely comprehensible medical terms that would be translated to mostly English at my appointments in the morning. I stay up for at least another hour thanking everything I know as well as trying to wrap my head around what a cancer free life could possibly look like for the first time in seven months.
November 2, 2021
I am gently awakened by my husband to take my next dose. I begrudgingly welcome the constant headache brought on by the steroids. Five more tabs down the hatch and back to sleep.
Another alarm and small nudge. “Are we going out to breakfast before your 8:15 appointment? If so, we have to get moving.” Knowing roughly what time it is and the small amount of sleep I was able to get I quickly decide that we will eat at the continental breakfast downstairs. I had a book that I wanted to pass along to the resource center at the Buffet Cancer Center and bring the gal running the place, Terri, a caramel macchiato. There was an instant bond between us when she helped light a spark within me three weeks ago. She helped pick out some wigs that transformed me outside and in. I wish I could send everyone on a cancer journey to her, her light shines brightly far beyond her services and I am grateful to have stumbled upon her office because she is sincerely so wonderful. I tell everyone to seek out their treatment center’s recourse office or center, visiting adds a portion of pure happiness to my trips in for chemo. Also, obviously, they have incredible resources.
We enter Nebraska Medicine’s Buffet Cancer Center to find about 30 people waiting their turn to go through COVID prescreening. I believe we were met with a wait to calm myself and slow down the rush we were in. It is amazing what you see when you know The Universe is, in fact, conspiring for your success. In order for us to get over to see Terri, we had a lot of ground to cover quickly. We got through the screening at 8:03 a.m. and we were at Radiation Oncology in six minutes. Win! My nurse was at the reception desk and took us to get my vitals immediately. I hadn’t seen her or anyone in RadOnc since May and it was so great to catch up, even if she was very surprised to see my hair in a bob as opposed to the mid-back blonde locks she had last seen me wear. The surprise escalated when I told her it wasn’t mine and went on to update her on my current treatment status. She is one of those nurses that was, no question, destined for the job. My husband and I both grew an awesome relationship with her back in April when we saw her a few times a week for brachytherapy.
My Radiology Oncologist, Dr. Wahl, came in and answered my questions and touched on concerns about my scans. There were two lymph nodes that popped hot in my PET scan in July, one left lower cervical (in my neck) and the other along the right pelvic wall. Both showed considerable shrinkage. I knew this information already from reading MyChart, but hearing the words directly from an oncologist hit differently and we are overcome with happiness. He tells my husband and I that this is a fast reaction to chemo and they are very pleased with progress. I was granted the luxury of skipping the pelvic exam they had planned because my last one was about six weeks ago. Privacy is a luxury that I don’t really remember. Through having a cancer related to a reproductive system, telling the world about said cancer, and having kids-privacy is a mere memory.
Checked in to the infusion center and we are taken back after about 15 minutes. My platelets have been low in the past and have been dancing on the line of being too low to receive my treatment the last two times. Since our home is 10 hours away from Omaha, I had blood tests done on the base at home Friday and sent down here to find out that my new practice of being mindful, intention, and concentrating energy on raising them has worked wonders and they are high! I did not have a urine test done at the base to make sure there is not protein present and my kidneys are still doing their job, so that is priority before I can get my chemo started.
My nurse, Kelsi, comes in to ask me for more urine to send down to the lab as it was the tiniest amount short, like half a milliliter short, and gets my pretreatment drips ready. One antinausea tab, two Benadryl, more steroids, and a long term antinausea drip. As the half hour of pre-drugs is finishing up, we hear the Urine Analysis shows negative for protein and we are set to start chemo. First up, Avastin. She’s like the kicker chemo. Not necessarily the star of the show, but has been proven to aid the other two in doing their jobs. Nate has gone to grab us lunch from downstairs. The new responsibilities of the role he was flung into are executed wonderfully and more efficiently every trip we make. He arrives just before the lines start at the food court and has lunch to me before the next chemo switch.
My knight roamed the hospital halls and brought me a burger and salad that I flew through. In comes the star, Paclitaxel. Forgive me for this Benadryl induced comparison, but she is the Cady from Mean Girls in the pack. Shows promise of having good intention, and just being a cool chick. She’s here to help and is down to go the extra distance to get her job done, no matter how malicious the nature may be. Next thing you know there is a schoolwide “Come to Jesus” and she’s coincidently right there when you get hit by a bus… without hair. Did she push you? No one may ever know, but in the end, shows heart and progress no matter the crap side-effects that follows in her wake. All of the exhaustion from the rush of the day hits at once and I stash my computer and get some rest after about an hour of writing and catching my day up.
I take my time in returning to the world of consciousness as Nate does the same. Kelsi is about to switch out my chemo and start the last, Carboplatin. It is a half an hour drip and I spend the rest of my time at the infusion center scrolling and chatting my husband up while he does the same.
My port is de-accessed and we are free to go! We head to a small shop to get overwhelmed browsing books and trinkets. I spend far too long staring at their wall of books before I realize I have a meeting in half an hour. We rush back to the hotel and make it just in time.
I am settled into bed next to my snoring soulmate with a book that I have been working on finishing for entirely too long. Our suitcases and cooler are already packed up and tucked away and ready for the drive back to our boys. What a good set of days. So much laughter, some tears, an uncountable amount of relief sighs and internal celebration, great conversations, and a treatment plan that IS WORKING! The way my husband and I both approach even the smallest aspects of life has changed in about every way imaginable. We look at things through lenses we didn’t know existed a year ago, and this hardship has brought out the biggest beauties in the smallest moments. Tomorrow I will hug my kids and tell them that yes, Mommy is getting better.
Jodi is a Cervivor community member who lives in North Dakota with her husband of five years and two small children and they spend most of their time outdoors. Jodi started a blog shortly after her diagnosis to bring awareness to the world of cervical cancer as well as share her progress with friends and family in one central location. Cervivor found their way into Jodi’s life in October 2021 during her second treatment regimen. She hopes to give other women in similar situations a sense of community by offering her story to bring to light that life with cervical cancer can have just as many highs as lows.